End‐of‐life care decisions for haemodialysis patients – ‘We only tend to have that discussion with them when they start deteriorating’

Lazenby, Sophia; Edwards, Adrian; Samuriwo, Raymond; Riley, Stephen; Murray, Mary; Carson‐Stevens, Andrew

doi:10.1111/hex.12454

Cited by 52 publications

(55 citation statements)

References 77 publications

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“…The growth in the prevalent dialysis population has been driven mainly by increases in longevity. 1,2 Consequently, appropriate use of conservative care for end-stage renal disease (ESRD), [3][4][5][6] palliative care in nephrology, [7][8][9][10][11][12] and elective withdrawal from dialysis [13][14][15][16][17][18][19] are issues currently engaging the nephrology community.…”

Section: Introductionmentioning

confidence: 99%

Early withdrawal and non‐withdrawal death in the months following hemodialysis initiation: A retrospective cohort analysis

Wetmore

Roetker

Gilbertson

et al. 2019

Hemodialysis International

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Introduction: Whether and how factors associated with elective hemodialysis withdrawal differ from those associated with non‐withdrawal death soon after maintenance hemodialysis initiation have not been well studied. Methods: A retrospective cohort analysis was performed using USRDS data from 2011 to 2014. Patients were randomly categorized 2:1 into training and validation samples. Elective withdrawal deaths were identified using the Death Notification form. Multinomial logistic regression was used to fit a prediction model for three outcome categories (withdrawal, non‐withdrawal death, survival at 6 months) as a function of demographic, comorbidity, and functional status. Findings: The training sample comprised 80,284 hemodialysis patients. Mean age was 71.7 ± 11.4 years, 44.9% were female, 72.9% were white, and 22.8% were black. Within 6 months, 19.1% died, of whom 2099 (2.6%) withdrew and 13,223 (16.5%) died of a non‐withdrawal cause; 13.7% of all deaths were withdrawals. Baseline characteristics and event rates were similar among the 40,142 patients in the validation sample. The model was calibrated adequately and could discriminate moderately well between withdrawal and survival (area under ROC curve [AUC]: 0.77) and between non‐withdrawal death and survival (AUC: 0.73). However, discrimination between withdrawal and non‐withdrawal death was relatively low (AUC: 0.62). Older age and white, compared with non‐white, race were each associated with greater odds of death, and these associations were stronger for withdrawal than for non‐withdrawal death. Discussion: Advanced age and white, as opposed to black, race were most strongly associated with early elective hemodialysis withdrawal compared with non‐withdrawal death. However, it is difficult to differentiate between patients who will experience early withdrawal vs. non‐withdrawal death, as many factors are similarly associated with both outcomes.

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Section: Introductionmentioning

confidence: 99%

Early withdrawal and non‐withdrawal death in the months following hemodialysis initiation: A retrospective cohort analysis

Wetmore

Roetker

Gilbertson

et al. 2019

Hemodialysis International

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“…It was reported elsewhere that physicians in UAE as well as in other countries have more comfort with withholding than with withdrawal of a life-supporting treatment in terminally ill patients [28,32,33]. This could be also related to the difficulty in initiating discussions of withdrawal decisions, lack of hospital policies, and the fear of inducing premature death [18,22].…”

Section: Discussionmentioning

confidence: 99%

Provision of renal care for patients with end stage kidney disease in persistent vegetative state, in United Arab Emirates: a national survey of renal physicians

Alshamsi

Chaaban

Alrukhaimi

et al. 2018

Libyan Journal of Medicine

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Patients with end stage kidney disease (ESKD) with severely impaired cognitive function have no survival benefit from dialysis. We therefore undertook a survey to explore the renal physicians’ practices of withholding and withdrawal of dialysis treatment in vegetative state patients in the United Arab Emirates (UAE). A cross sectional survey of 29 nephrology practices in UAE exploring physicians’ practices in making decisions of withholding and withdrawal of dialysis treatment during provision end-of-life care for patients in persistent vegetative state (PVS).The majority of participants practice in governmental non-for-profit dialysis units (79%), and think they are well prepared to make decision with patients and family on issues of dialysis withdrawal and withholding (69%). If a chronic dialysis patient became permanently unconscious only few respondents (17%) indicated probability of stopping dialysis. On the other hand, more respondents (48%) reported that dialysis is likely to be withheld in PVS patients who develop kidney failure. In high risk or poor prognosis ESKD patients and given how likely they would consider each option independently, respondents reported they are likely to consider time-limited dialysis in 78% of the time followed by stopping (46%) or forgoing (27%) dialysis. Majority of the participants perceived that their decisions in providing renal care for PVS patients in UAE were influenced by the family sociocultural beliefs (76% of participants), the current hospital policies (72% of participants), and by Islamic beliefs (66% of participants). Only few perceived access to palliative care (30%) and treatment cost (17%) to have an impact on their decision making.Decisions of initiation and continuation of dialysis treatment to ESKD patients in PVS are prevalent among nephrology practices in UAE. Development of local guidelines based on the societal values along with early integration of palliative kidney failure management care would be required to improve the quality of provision of end-of-life renal care in UAE.Abbreviations: ESKD: stage kidney disease; UAE: United Arab Emirates; PVS: persistent vegetative state; RPA: Renal Physicians Association; ASN: American Society of Nephrology; EMAN: Emirates Medical Association Nephrology Society; CPR: cardiopulmonary resuscitation.

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“…I never got to see that whole process through with anybody really apart from her….I learned an awful lot and how to handle the family and their expectations, and her own expectations. among dialysis patients 17, 23,26,28 in addition to the perceptions of older dialysis recipients', that nephrologists are reluctant to engage in end of life discussion 13 .…”

Section: End Of Life Carementioning

confidence: 99%

“…Prognostic uncertainty among nephrologists resulted in many avoiding this discussion with patients, mirroring clinical practice elsewhere 14,26 . Discussing prognosis was even discouraged by some nephrologists.…”

Section: End Of Life Carementioning

confidence: 99%

“…Discussing prognosis was even discouraged by some nephrologists. Nephrologists' fear that discussing prognosis, the limitations of dialysis, dialysis withdrawal and end of life care will distress patients and jeopardise the doctor patient relationship 14,26 . Despite the limitations of dialysis in an older population, a number of nephrologists chose to ignore the statistics and based their decision to offer older patients dialysis on their experience of salient patients who had exceeded their life expectancy on dialysis, replicating practice elsewhere 14 .…”

Section: End Of Life Carementioning

confidence: 99%

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Advance care plan barriers in older patients with end-stage renal disease: a qualitative nephrologist interview study

O'Riordan

Noble

Kane

et al. 2019

BMJ Support Palliat Care

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ObjectivesOlder patients with end-stage renal disease are willing participants in advance care planning but just over 10% are engaged in this process. Nephrologists fear such conversations may upset patients and so tend to avoid these discussions. This approach denies patients the opportunity to discuss their end-of-life care preferences. Many patients endure medically intensive end-of-life scenarios as a result. This study aims to explore the rationale underpinning nephrologists’ clinical decision-making in the management of older patients with end-stage renal disease and to make recommendations that inform policymakers and enhance advance care planning for this patient group.MethodsA qualitative interview study of 20 nephrologists was undertaken. Nephrologists were asked about their management of end-stage renal disease in older patients, conservative management, dialysis withdrawal and end-of-life care. Eligible participants were nephrologists working in Ireland. Five nephrologists participated in a recorded focus group and 15 nephrologists participated in individual digitally recorded telephone interviews. Semistructured interviews were conducted; thematic analysis was used to distil the results.ResultsThree key themes emerged: barriers to advance care planning; barriers to shared decision-making; and avoidance of end-of-life care discussion.ConclusionsAdvance care planning is not an integral part of the routine care of older patients with end-stage renal disease. Absence of formal training of nephrologists in how to communicate with patients contributes to poor advance care planning. Nephrologists lack clinical experience of conservatively managing end-stage renal disease and end-of-life care in older patients. Key policy recommendations include formal communication skills training for nephrologists and development of the conservative management service.

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End‐of‐life care decisions for haemodialysis patients – ‘We only tend to have that discussion with them when they start deteriorating’

Cited by 52 publications

References 77 publications

Early withdrawal and non‐withdrawal death in the months following hemodialysis initiation: A retrospective cohort analysis

Early withdrawal and non‐withdrawal death in the months following hemodialysis initiation: A retrospective cohort analysis

Provision of renal care for patients with end stage kidney disease in persistent vegetative state, in United Arab Emirates: a national survey of renal physicians

Advance care plan barriers in older patients with end-stage renal disease: a qualitative nephrologist interview study

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